As caregivers, we spend a lot of time trying to understand the emotional changes our loved ones with dementia are experiencing. But just as important to understand is the emotional upheaval we as caregivers are going through.

It’s normal to feel loss when someone you care about has Alzheimer’s disease. It’s also normal to feel guilty, abandoned, and angry. It’s important to acknowledge these emotions and know that you may start to experience them as soon as you learn of the diagnosis.

Alzheimer’s gradually changes the way you relate to the person you know and love. As this happens, you’ll mourn him or her and may experience the stages of grieving: denial, anger, guilt, sadness, and acceptance. These stages of grief don’t happen neatly in order. You’ll move in and out of different stages as time goes on. Some common experiences in the grieving process include:

One response to “Caregiver Grief, Mourning, and Guilt”

Everyone has different perspectives; they are formed by our own personal histories. When it came to the topic of “grief” my co-writer and I discovered we have very different perspectives. Writing about grief caused some stress in our book-writing endeavor. What follows describes my point of view.

My father was diagnosed with lymphoma in 1958, at the age of 44. As was common during those times, the doctors advised my mother not to tell him. But, after a crisis hospitalization, she did tell my brother (age 15) and me (age 11). This became a family “secret” that was never discussed. Four years later, Dad chose to go to the Mayo Clinic in Rochester Minnesota, because he did not believe (accurately) that his physicians were telling him the truth about his diagnosis. There he was told that he had lymphoma. He died within a few weeks, never having returned home.

When my mother passed away suddenly 35 years later, all that I could think was, “She’s finally with him again; she has waited so long.” My father’s early death did, of course, have a profound impact on me. When I grieve for my parents (which I seem to do more the older I become), it is always in the context of the times our family lost with him—things like his never knowing his grandchildren.

In my husband’s family, grieving was more intense when their mother was alive and rapidly disintegrating day by day. It is not uncommon for children to struggle with facing their parent’s or parents’ deterioration—whether it is cognitive or physical—and grieve for the loss of the person they once knew even while that person is still living.
My husband and his siblings seemed to have a value about death that is similar to mine: As sad as it is to lose a parent, if that loved one has lived a long and good life, as my mother-in-law did, we didn’t look at death as tragic—just the natural end to living.

In truth, whenever I know of someone of advanced age who is sick and suffering and heading toward life’s end, I always say this little prayer: “Lord, take this soul quickly and gently into the night to be with You in your heavenly kingdom and in Your perfect love.”